Need help with Medicine decision

BonnieM94
BonnieM94 Member Posts: 1
edited 8:41AM in Living with arthritis

I have been diagnosed with Early rheumatoid arthritis and I have been taking sulfasalazine but the specialist thinks I need to change medication and is suggesting methotrexate or leflunomide and I have read up about the side effects and the words 'cancer treatment' are scaring the hell out of me. 'Hair loss' 'can cause birth defects' are the main concerns. I may not be actively trying for a baby but I am 31 and I have an 11 year old, I have been with my partner a long time (over 10 years) and now we are starting to talk about potentially having a baby. I feel if I start any of these, my body clock is just going to run out and I will not have any luck. And losing my hair is something I never want to happen. Very superficial I know but my hair is like my security blanket so I am finding it really difficult. Please help me and let me know how "common" hair loss is. And the common side effects people have experienced.. And also the success rate of conception after the medication.

Comments

  • Ellen
    Ellen Moderator Posts: 1,989

    Hi @BonnieM94 welcome to the online community. I see you are concerned about possible side effects of Methotrexate and Leflunomide. Many of our members are on one or other of these medications so hopefully you will get some replies.

    This might be of interest on the subject of hair loss and Methotrexate (MTX):

    https://www.versusarthritis.org/news/2022/january/new-research-profiles-side-effects-linked-to-methotrexate/

    All side effects really and quotes 9% with hair loss I think, but do read it yourself. I do not think at all that not wanting to lose your hair is superficial. Our hair is part of our identity.

    This mentions pregnancy another potential consideration for you:

    https://www.versusarthritis.org/news/2022/march/common-questions-about-taking-methotrexate/

    Some informtion about Leflunomide is here:

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/leflunomide/

    Finally I did a search for threads on the subject of pregnancy and DMARDs:

    https://community.versusarthritis.org/search?domain=all_content&query=pregnancy%20on%20dmards&scope=site&source=community

    Hopefully someone will be along soon to share their experience on either of your potential choices.

    Best wishes

    Ellen.

  • iwannerbeme
    iwannerbeme Member Posts: 55

    Hi, I started taking MTX last September, firstly the doses for RA are much, much lower than for cancer treatments even at RA higher doses 25g. That said slight hair loss is listed as a possible side effect at those levels. Ive not had any side effects from MTX, I take folic acid on the days I dont take the MTX and have a diet high in folate anyway (plant based, no UPF and anti inflamatory) I am taking 20g MTX a week. I was terrified of taking it but its been fine. When you start it, you will probably go on a lower dose and have blood tests fortnightly to make sure everything is going ok, or at least thats what was prescribed for me, if things go well they may want to ramp it up. Aggressive treatment in the early stages is the current thinking I believe. Im in clinical and biochemical remission, I got that in 8 months, I am still taking MTX but it will be reviewed when Ive been stable for a bit longer. I dont know about the pregnancy question, I think they advise being off MTX for 3 months before you start trying but that is something to discuss with your consulant and GP. Hope everything goes OK

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